| | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | Hello all, I have had swelling in my ankles. But now my feet are so swollen and they have developed pitting edema where as I press in on my ankle for a few seconds and the impression lasts for over a minute. I tried to put on footwear other than my slippers and they will not go on my feet at all. I am wondering if this something other than the lymphedema that has been building up in the back of my head and my left neck and shoulder. Congestive heart failure? Kidney problems perhaps. Anyone have lymphedema with pitting edema? I have no fever heart rate is 120/78/pulse83 resting. I know we are not dr.s but any ideas would be great. thank you shawn U. PS I will be going to seek medical advise later this morning.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Call your doc right away. That is not something that sounds like it should be fooled around with.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | yeah I edited my post because I forgot to mention that I will be going to the doctor later this morning.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Christine is right, and you're right by seeing the doctor, It could be kidneys, chemical imbalance, meds, dehydration, lack of movement, etc. had it when I was in the hospital, and my legs blew up, before that the whole body with systemic whole body inflammatory process. Good luck. Keep in touch. .
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | will post as soon as I get back from the DOC,s
See ya later paul,
Shawn U.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | That's great. Pitting edema can be caused by many things. If it is chronic then it's a sign of congestive heart failure (my husband's aunt has what we call cankles (or Zi Anna ankles) - where her calves literally run into her feet and are swollen all the time. She is a prime candidate for congestive heart failure. Sometimes if you are prone to edema, and spend too much time sitting the blood and fluid will pool in your feet and legs - but if you have other health issues - which you do, then it could very well be representative of kidney issues. SO I'll quadruple the motion... and say make sure you see someone ASAP. Which you are so GREAT and good luck.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | Well just got back to my appointment, Doctor ordered some tests but thought that it was a mild case Ie. pitting not above the knees. He thinks that it is possibly lack of mobility.( considering that I went from being on my feet 8-10 hours a day to sitting at this computer for most of the day. He thinks the edema is not related to the Lympedema. And said it was ok to raise my legs above my heart to see if that helps, also wants me to start increasing my time on feet slowly over the next week or so. So he did tests blood tests to check for signs of kidney over work, heart enlargement and others Cbc chem 4. Oh and thought it might be electrolyte inbalance. And told me if symptoms of shortness of breath, pitting edema that progresses up past the knees. fever above 100 degrees. To go to the ER. So Good news.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Good thorough exam Shawn, and report! That's what I had to do for a while. Keep my legs raised. I was bed bound, so couldn't walk, and that caused the swelling too.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
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